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Tag: health services research

Bold ideas for the joint design of assistive technology provision
We would like to thank you for attending the Outpatient Partner Conference for Assistive Technology Providers on November 15, 2019. It was a very interesting conference where we developed ideas together on how we can implement better care for the patients in our network. Here are some impressions of the conference. We will keep you…

Study to record treatment with nusinersen in adults
Nusinersen (Spinraza®) is approved for the treatment of 5q-associated spinal muscular atrophy (SMA). For infants and children, nusinersen can halt the progression of the disease and improve muscle function. For adults, no systematic data on treatment with nusinersen are available to date. Scientific treatment documentation is therefore necessary to improve the data situation for adults…

I DONATE. My data for better care: the outpatient partner register study
Donate your data for better care with the support of the Outpatient Partner Registry Study. The Outpatient Partner Registry Study collects treatment data and patient self-assessment data in individual modules. By ‘donating’ your data to the registry study, you are helping to improve research into the care of chronic neurological diseases. The Outpatient Partner Registry…

International publication on the results of platform-based supply management of assistive devices for ALS
In January 2018, the international journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration published the results of a care management program for assistive devices in amyotrophic lateral sclerosis (ALS) via the Ambulanzpartner internet platform. The provision of assistive devices is of central importance in ALS. Despite its socio-medical relevance, the provision of assistive devices in ALS…

Online recording and monitoring of the ALS-FRSr scale via ambulance partners
The “ALS Functional Rating Scale“(ALS-FRSr) is an internationally established scale for assessing ALS disease severity, which evaluates 12 motor functions (subscales) that are typically impaired in ALS. Since March 2017, we have been offering people with ALS the opportunity to document their individual ALS-FRSr scale online at regular intervals. By repeatedly answering the scale at…
The ALS consultation at Halle University Hospital is a new member of the OutpatientPartner network
The special consultation for ALS at the Outpatient Clinic of the Neurological University Hospital Halle (Saale) has been a new partner in the OutpatientPartner network since November 2016. Our network currently consists of 2,300 people with amyotrophic lateral sclerosis (ALS) who are treated at the university hospitals in Berlin, Bochum, Dresden, Hanover, Magdeburg, Jena, Rostock…








